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Conference delegates will learn about cutting edge research findings, the latest clinical advances in the effective comprehensive management of the disease and emerging care issues that will enhance their knowledge and skills. The educational program includes a robust agenda of lectures, workshops, symposia and roundtables and provides CME for physicians as well as continuing education credits for nurses, pharmacists, psychologists, rehabilitation professionals, and social workers. Several independently supported satellite programs will also offer additional accredited learning opportunities in multiple sclerosis.

“Multiple sclerosis presents the health care professional with daily challenges—the variable course of the disease, complex care issues and ensuring optimal care within an evolving healthcare environment,” said June Halper, Chief Executive Officer, CMSC. “Our Annual Meeting will provide the essential elements for their MS toolbox and enhance their knowledge and care to better serve patients, families and colleagues.”

Marian L. Evatt, MD, MS, Department of Neurology, Emory University School of Medicine

Robert Fox, MD, an MS specialist in the Mellen Center for Multiple Sclerosis at the Cleveland Clinic

J. William Lindsey, MD, professor of neurology at the University of Texas Health Science Center at Houston (UTHealth) Medical School and a member of the Mischer Neuroscience Institute at Memorial Hermann-Texas Medical Center

Genzyme’s new multiple sclerosis drug Aubagio (teriflunomide) has received final guidance recommendation from the National Institute for Health and Care Excellence (NICE).

Aubagio (teriflunomide) is used to treat adult patients with active relapsing, remitting multiple sclerosis (RRMS). Teriflunomide is administered as a first oral, once-daily, and first line therapy for reduction of annualized relapse rates. It is also used to reduce disability risk accumulation compared to placebo during the Phase III controlled trials. The drug is developed as a selective immunomodulatory disease-modifying treatment for MS and has compounded anti-inflammatory properties.

Aubagio provides a viable alternative to injectable first-line RRMS treatment options. Carole Longson, NICE Health Technology Evaluation Center Director, said, “As an oral treatment with a different side-effect profile, teriflunomide offers a new option for treating relapsing-remitting multiple sclerosis, which could have a substantial impact on quality of life for people with relapsing-remitting multiple sclerosis.” Director Longson added that all current treatments for MS are injectables and can be associated with disagreeable side effects.

The EU granted marketing authorization for teriflunomide based on the TEMSO (Teriflunomide Multiple Sclerosis Oral) and TOWER (Teriflunomide Oral in people With relapsing remitting multiplE scleRosis) clinical trials. During the two-year, double-blind Phase III trial, teriflunomide 14 mg decreased the annualized relapse rate in patients with RRMS by 32% (TEMSO) and 36% (TOWER) compared to placebo. The drug also reduced sustained disability accumulation risks by 30% (TEMSO) and 32% (TOWER).

Benjamin Turner, Barts Health NHS Trust consultant neurologist, said, “Teriflunomide is a simple, effective, once-daily oral medication that will be invaluable for people with MS… This approval is great news for UK patients and especially those who cannot tolerate injections, as until now there have been limited treatment options open to them.”

With NICE’s final guidance recommendation, the National Health Service (NHS) is induced to a legal obligation to begin funding treatment for eligible patients within the next three months.

Gilenya (fingolimod) is the first in a new class of multiple sclerosis (MS) therapies called sphingosine 1-phosphate receptor modulators and the first oral therapy approved to treat relapsing-remitting MS (RRMS). In the US, Gilenya is indicated for relapsing forms of MS. In the EU, Gilenya is indicated for adult patients with highly active RRMS defined as either high disease activity despite treatment with beta interferon, or rapidly evolving severe RRMS. A Phase II/III study of Gilenya in patients with chronic inflammatory demyelinating polyradiculoneuropathy was initiated in 2012. In 2012 Gilenya continued to show rapid growth as the first once-daily oral therapy approved for relapsing remitting and/or relapsing forms of multiple sclerosis (MS and RRMS) in adult patients, and achieved $1.2 billion in annual sales.

The Market

The Multiple Sclerosis market has been dominated by injectables - interferons and more recently Teva's Copaxone. It is believed that interferon medications such as Rebif, Betaferon, and Avonex are effective against MS because they help regulate the immune system to decrease attacks on myelin. Rebif has been shown to be effective in treating patients with relapsing-remitting MS. The interferons have been shown to reduce relapses in relapsing-remitting MS, though not for primary progressive multiple sclerosis, for which there are currently no disease-modifying treatments proven to be effective.

Stem Cell Update

Serious science playing out in medical laboratories is strange and mysterious. Individuals in white coats , some gowned and working in clean rooms, perform specialized tasks amid the strange sounds of whirring machines unknown to most. We spent part of the afternoon yesterday in such a place, the labs of the Tisch MS Research Center. Though I thought these creatures looked like CIA types, they were busy extracting stem cells from bone marrow. They showed me my cells. There is a lot to understand. Those cells will be infused back into my body in about one month. We will share our video soon. See if you can make sense of it. I am shocked that I think I get it.

Wednesday, January 22, 2014

These calls are very
informative. You can listen to them anywhere by
just dialing the number and then putting in the access number for each call.
Please be sure to press the # key when they ask for the reference number.

Recorded Phone Calls

Calls can be accessed by calling (712) 432-1202 and then entering the
Access codes shown below.

I am Lisa Dasis, a 52 year old mother of two grown children
and grandmother of four wonderful grandchildren. My husband and family are so
supportive of me especially since being diagnosed with Multiple Sclerosis back
in 2004.

Receiving my diagnosis was not an easy process as it took
many years and several incorrect diagnosis to get to that point. You would
think being a Registered Nurse would have helped me with ascertaining it, but
as many of you know many symptoms would come and go with different durations.
Often when I would finally get into a physician’s office, there was not a
symptom present for them to observe. There is a family history of Lupus so when
receiving this diagnosis, there wasn’t much of a surprise. Many symptoms of
Lupus mimic MS, but as time marched on and everything started to not only
increase in duration but a lot of new problems started to appear, I started
questioning if something else could really be going on.

My career at that time was an orthopedic surgical nurse which
required me to hold extremities and pass instruments to the surgeon. This job
required a great deal of physical strength both in holding extremities and
standing for long length of times. It became impossible for me to manage this
as my condition deteriorated, so I found myself moving into positions that took
less physical strength but more mental stamina. This too became an obstacle for
me when the cognitive disorders appeared. Nursing is one area where mistakes
cannot happen, so as it became a major problem I pushed hard for a referral
outside my small community for a second opinion. In the back of my head I
started to suspect Multiple Sclerosis and had mentioned it to my doctor. He
felt that there was a small chance of this being possible but fortunately, he
referred me to a MS Specialist/Researcher in Nashville, TN.

Within 15 minutes of my exam with this physician, he said,
“I believe you have MS and feel it is located primarily in your neck.” A MRI of my head and neck, spinal tap, and an
Evoke Potential test were all ordered and results given to me within two weeks
of my initial visit. The primary diagnosis was RRMS and was immediately put on
Betaseron. Within two years I was told that I had Progressive MS and that the
medication I was on wasn’t working. My EDSS score had gone from a 5 up to a
9.7, was in a wheelchair full time, loss of control of bladder and bowels,
overwhelming fatigue, weakness, and experiencing major slurred speech and
cognitive disorders. My physician called my husband and me in and said that
there was a small window of opportunity to turn things around. He had found a
medication that had worked very well over in the UK for several years and
wanted to try this on me. This medication was called Campath, or also known Alemtuzumab, now
labeled Lemtrada.

My first dose started in January of 2006 which I received in
his office by I.V., with each dose lasting about 5 hours for 3 days. The first
year after taking it, my blood work indicated it was working but I really didn’t
see an improvement with my condition. The second dose was given a year later
following the same protocol as before. Once again my blood work showed it was
working but this time there was enough improvement that I was able to get out
of the wheel chair, and had control of both bladder and bowel functions. By the
end of the second year I only need a cane to assist me with ambulation. We
repeated the 3rd dose in January of 2008; both my husband and I
where totally blown away with how my body responded to this dose. By the summer
of that year I was walking without any assisted devices, there were no
exacerbations experienced, and it was the closest to feeling like the person I
had once remembered. Taking advantage of this, I began walking daily and
started an exercise regime.

The following 4 years I went without taking another dose of
Lemtrada.
I felt amazing and was walking up to 4 miles a day. Two of the three years there wasn’t a flare-up
that required a intervention. My MRI’s had improved a great deal and it had
been so long since I remembered feeling that good that I started thinking about
possibly returning to work. By the end of the 3rd year though, a
treatment for an exacerbation was needed. Year 4 was very difficult for as my
condition started back sliding. There were more “bad” than “good” days which
required Solumderol as treatment. My doctor and I discussed my next
dose of Lemtrada but it wasn’t available for purchase or through a study.
It had been taken off the market, which really surprised me because I had heard
over the past couple of years that it was close to being FDA approved.

March 2013, I received my 4th dose
through a study by my physician. This dose didn’t work this time by evidence of
additional lesions on my MRI compared to the one performed before the dose was
given. I have also been experiencing a great deal of weakness, fatigue, falling
episodes, cognitive problems, and several other symptoms that have not
responded even to Solumderol. It has been a difficult year both with living
with the active MS and being disappointed with the outcome of my last
treatment. My doctor and I feel that length of time that we had to wait for
Lemtrada to be available again, as a “study” drug that it could take additional
doses for my body to respond as it did before. My next dose is scheduled this
February and must say that I am excited and hopeful for a positive outcome. My
faith in this medication is extreme and can’t help but be excited on how much
it will help others.

I write a blog about MS call MSlisaSAYS.com and have spoken to several
individuals who have taken Lemtrada and are who are just now taking it for the
first time.
The responses from those who have taken it before are all positive and for
those who are taking it now for the first time or who are hoping to be treated
with it in the future, I want you to know how much it has been my miracle drug
and hope your outcome is as great as mine.

=======================

In response to the many who need an option for another MS medication, I posted a petition online several days ago, that asks the FDA to reconsider their decision to deny this medication in the USA. Can you all imagine this?

Being denied in the USA - YET APPROVED everywhere else in the world.

Why is this?

Please help LISA and Hundreds if not thousands of others, to have another medication Option in their tool-chest.

I for one, have nothing to gain from Lemtrada being approved. Not financially and not by use of the medication.

Modest familial risks for multiple sclerosis

Even though multiple sclerosis is largely caused by genetic factors, the risk of patients' relatives developing the disease is lower than previously assumed. This is the conclusion of a new population registry-based study, published in the scientific journal Brain.

In the present study from Karolinska Institutet, researchers have assessed the familial risks for multiple sclerosis (MS) by using population registers and health care registries. This way, the researchers were able to include in their study almost everyone diagnosed with the disease in Sweden. Slightly over 28,000 individuals diagnosed with MS from 1968 onwards were identified. By using the Swedish Multi-generation registry, both biological and adopted relatives were identified and the researchers could assess the risks for the different groups.

This is the first study for MS in which the familial risks have been analysed using matched controls. By including randomly selected controls and their relatives, the researchers could also assess the risk for relatives of MS patients developing the disease compared to the risk for the population in general.

The estimated risks in this study turned out lower than the previously reported high risks. The risk for a sibling to a person with multiple sclerosis for developing disease was seven times higher compared to the general population, while the risk for a child of an MS patient was five times higher. The study found no increase in risk for grandchildren and nieces/nephews.

"The population registers in Sweden are reliable tools for finding relatives to MS patients and their possible MS diagnosis, instead of relying on the patients' memories. Our study is a good example of how one can quickly achieve more reliable results than the previous studies that were based on patient groups collected in hospitals throughout decades," says Helga Westerlind, PhD student at the Department of Clinical Neuroscience and first author of the article.

The researchers have also used the Swedish twin register to identify twins with multiple sclerosis and investigate how genes, shared environment and individual risk factors contribute to the disease. The analysis confirmed previous results: MS seems to be primarily caused by genetic factors, and secondarily by individual risk factors. A shared environment does not appear to be of any significance.

###

The study was funded by the Swedish Research Council, Karolinska Institutet, Stockholm County Council, the Bibbi and Nils Jensen Foundation and the Swedish Research Council for Health, Working Life and Welfare.

Sanofi’s multiple sclerosis drug Aubagio won final approval from the U.K.’s health-cost agency, allowing access to a market in which it will compete with Novartis AG’s Gilenya.

The National Institute for Health and Care Excellence, or NICE, recommended Aubagio, also known as teriflunomide, as a treatment option for adults with relapsing-remitting multiple sclerosis, the most common form of the disease, it said in a statement today. The decision confirms a preliminary ruling made last month in which NICE recommended the drug after Paris-based Sanofi agreed to a price cut.

The drug is the second oral MS treatment to win NICE’s backing in the U.K., after Basel, Switzerland-based Novartis’s Gilenya was approved in April 2012. Aubagio is the only oral MS drug to demonstrate an ability to slow the progression of disability in two trials, William Sibold, the head of MS at Sanofi’s (SAN) Genzyme unit, said in a telephone interview.

“That consistent efficacy is something that resonates very well with the community,” Sibold said.

I just read one of the
better written articles on patient compliance with medication and treatment
protocols that I have seen in my 40 years as an RN. It is long (9 pages)
but written in an easily readable and understandable style and gives clearer
insight into why we do not always take our medications as directed. It
certainly provides food for thought on the occasional difference in patient
goals and those of their health care provider. Here is a link to the
Article:

Allowing medical marijuana could foster more sensible attitudes about decriminalization

It’s remarkable how quickly the landscape is shifting on the divisive issue of marijuana legalization. Not just in headline-grabbing states like California, Colorado and Washington, but here in Florida, too.

This month, Republican lawmakers in the Florida House allowed a hearing on medical marijuana legalization, focusing on a certain marijuana strain that may help treat seizures in children. After hearing testimony from parents with children who suffer from seizures, a top Republican lawmaker vowed to put together a bill that would permit those treatments using a marijuana strain called “Charlotte’s Web.” One Republican lawmaker, a Baptist minister, called it “using the substance wisely as God intended.”

That sort of comment from a conservative member of the Legislature’s Republican caucus would have been almost unimaginable even a few years ago. But things are happening so quickly in the state and around the country that even this development could be overtaken by other events. A push is on to legalize medical marijuana in Florida through a constitutional amendment, and the backers of the proposed amendment say they have more than enough signatures to get the measure on the ballot.

Those signatures still have to be verified, and the state Supreme Court has to approve the ballot language. But if those two hurdles are cleared, voters could vote on whether to legalize marijuana for medical use this November.

All of this is happening little more than a year after Colorado and Washington legalized marijuana use for any purpose, and at the same time that President Obama is making headlines for commenting that he believes marijuana is no more dangerous than alcohol, and that the experiments with legalization in Colorado and Washington are important because of the way marijuana arrests disproportionately target African-Americans.

As the Legislature’s hearing on medical marijuana show, the politics of drug legalization are changing fast. Whether voters get a chance to speak on the issue this November, a reckoning inevitably will come. And it will be sorely needed.

Allowing medical marijuana in Florida is a common-sense choice to alleviate pain for thousands of sick people. Perhaps just as importantly, legalizing marijuana for medical purposes would create a political environment more suitable to exploring ways to decriminalize marijuana possession and regulate its recreational use at the state level.

SYMPTOMS of MS

In multiple sclerosis , damage to the myelin in the central nervous system (CNS), and to the nerve fibers themselves, interferes with the transmission of nerve signals between the brain and spinal cord and other parts of the body. This disruption of nerve signals produces the primary symptoms of MS, which vary depending on where the damage has occurred.

Over the course of the disease, some symptoms will come and go, while others may be more lasting.

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